Pages

Wednesday, 1 May 2013

Practicing Mould Avoidance

How to Practice Mould Avoidance as Outlined by Erik Johnson

Toxic Mould Via www.ciriscience.org

"Mould Warriors" are those who advocate mould avoidance as a treatment for MCS and CFS (among other conditions). Richie Shoemaker, Lisa Petrison and Erik Johnson are a few of the biggest proponents. Lisa and Erik have been advocates for "extreme mould avoidance," a system that has cured them both of CFS. I will outline what is involved in this treatment and then go in to how to do a test run to see if mould is affecting your health.

While Erik focuses mainly on mould, I focus on avoiding other toxins as well as mould, especially in the beginning of this experiment. I have noticed, like many MCS patients, that when you get out of a chemical and mould filled environment you go through the period of increased sensitivity (like Erik explains). Once you become very aware of what is bothering you, it becomes easier to avoid toxins, and in turn avoid many of the symptoms of CFS. The body often heals a significant amount just from the avoidance of chemicals and mould. Though some people do get stuck in the hyper-reactivity mode and cannot go back to regular housing or regular interactions with people and places. The amount that someone recovers can vary anywhere from a little bit better to 100% better. It is rare that I see someone get 100% better from avoidance alone. There are usually other factors involved in CFS. But it often is the push the body needs to start responding better to other interventions.If you have CFS and you do not perceive any sensitivities to mould or other environmental toxins I would suggest that you have become too acclimatized to them and should conduct a short experiment by finding temporary safe accommodation in the cleanest environment you can afford. (For inspiration on others who have improved from moving to a cleaner environment check out The Locations Effect). Erik talks about a "Mobile Environmental Control Unit" which is a "safe house" trailer or RV totally devoid of mould. I have written a post on mobile safe homes and safe trailers.Here I will summarise Erik Johnson's mould avoidance protocol based on the document "Role of Toxic Mold in CFS", which is available here. A new guide that is much more concise is now available: A Beginner's Guide to Mold Avoidance: Techniques Used by Hundreds of Chronic Multisystem Illness Sufferers to Improve Their Health.

Mould Avoidance, According to Erik Johnson

Acute Symptoms to Mould Toxins Include:

Anxiety and depression

Vague feelings of unease

Heart palpitations; sense of cardio-distress

Feeling like you can't breath

Skin hypoperfusion

"Sensation of extreme lethargy that inexplicably abates upon rising."

A burning sensation in the nose

Note from Corinne: these are the symptoms Erik has in mouldy buildings. I have throat swelling, and my delayed symptoms include heart racing that makes sleep difficult, and in the worst buildings chest pain. There are a wide variety of symptoms you can have from mould that may be immediate or delayed so you will have to find yours by getting clear and then going into mouldy buildings to test your reaction. Different moulds can produce different symptoms.

Locating the Toxins and Identifying Your Personal Response to Them:

Keep in mind mycotoxins do not necessarily have an odour, and not all mould is toxic.

To figure out your reaction: go into a contaminated place and note the symptoms, then go through a decontamination protocol and enter your safe house or pristine location (outdoors), and compare how you feel. (More on decontamination protocol below).

To fine tune your ability to detect contaminated objects: take an object you know has been in a place contaminated with toxic mould, take it out to a really clean location and notice how you react to that object. (Do not bring it into your living space, test it outside).

Note that reactions to objects are cumulative. It is not necessarily just the one that tipped you over the edge that is the culprit.

Your own specific reaction is your best guide to figuring out the source of the toxins.

For Erik anxiety and depression symptoms are better indicators than "physical" reactions.

Insomnia is another really good indicator of exposure.

Remember that symptoms can be delayed for about 4 hours.

To test a house for mycotoxins, you have to sleep there for a number of nights. Changes in the wind and weather can release toxins or bring in different toxins through the air.

Note how changes in the weather and EMFs can affect the mould spores and toxicity of a place.

How to Practice Mould Avoidance:

Setting up shop:

Put everything in storage (bringing your old possessions to a new safe house will reverse all your other efforts).

Find a clean location. Somewhere as "pristine" as possible. The desert, the coast, islands etc.

Assess every item before bringing it in. If not acceptable - wash, leave in the sun and assess again. Some items hold on to toxins while others can easily be washed.

Move your trailer as quickly as possible to another location if you detect that the outdoor air contains toxins - if the place where you sleep is being contaminated by outdoor toxins you must move; having a safe place to sleep is of utmost importance.

Decontamination:

If you go through an area contaminated with mould, shower and change your clothes. (You may be showering up to 10x per day).

Leave contaminated clothes/items in an isolation area, preferably outside, bag them to be cleaned and re-assessed later. Don't bring anything contaminated into your safe house, especially the room where you sleep.

Bag clothes, shower and change clothes as soon as you can after any exposure in the beginning. (until you have significantly improved).

Thoroughly washing your hair is important after being somewhere significantly toxic.

Shower before sleeping and make sure nothing contaminated comes near your sleeping area.

Store or throw away anything you cannot remove toxins from with washing; remember that some items absorb the toxins and they cannot be washed off.

Upkeep:

It's difficult to avoid contaminating a mattress or pillow so a camping cot is recommended instead. A washable sleeping pad and blankets can be used for padding. A rolled-up towel can be used as a pillow. If you feel that any of your bedding has been contaminated, wash it, and put it out in the sun if the air is clean.

After washing, it is usually best to dry bedding and clothes inside the safe house. Keep extras bagged.

In the daytime cover bedding with a plastic cover (a poncho even).

Having layers of bedding is handy in that you can wash and replace top layers frequently, as they become contaminated easily.

New furniture (or other items) need to be tested for your own sensitivities before bringing into the safe house. Many warehouses are mouldy and can contaminate items.

Electronic devices are fine as long as kept in the safe zone. Once they pick up toxins they cannot be decontaminated.

Stages of Mould Avoidance:

Prior to starting avoidance, the body masks acute symptoms making it difficult to pinpoint exactly the source of the toxins. The patient usually gets incredibly sick before finding the impetus to move and start mould avoidance. (You don't have to wait until you hit rock bottom though!)

The safe trailer and pristine location together form a baseline.

Out in a clean environment the patient becomes much more sensitive and attuned to toxins and gains the ability to identify their source, and therefore avoid them (here is where it may seem that it is getting worse before it gets better).

After 6 months or more of following the protocol and detoxing, the person starts to recover and can then build up their tolerance again.

Building up Tolerance/Re-Integration:

After following a strict protocol of avoidance and decontamination Erik was able to build up his tolerance to toxins. Erik was then able to go back to work in a place that had been problematic before. He can handle doses of toxins as long as he keeps the exposure within his limits.

Continuing to have a safe, clean place to sleep is important as our bodies do significant healing at night.

Items can be brought back out of storage. The worst items offgassed after 5 years (if the storage facility was not mouldy).

Re-introduce items or problematic locations slowly so that you can stay within your tolerance level.

Erik adds that: "this strategy applies regardless of whether the nature of the chemical injury is - either mold or some other chemical, or perhaps even both." I agree; I think that this strategy can be used for sensitivities to all types of chemicals for those with MCS, CFS and Fibromyalgia. While this strategy may seem extreme at first, many people do see substantial recovery from this. Some people do get significantly better but get stuck in the hyper-reactive stage. Others attempting to do this in a not great location can go into hyper-reactive without getting better.

If you have more questions about practicing mould avoidance, you can read Q&As here.

Avoidance Test-Run/ Mould Sabbatical

Almost everyone I know with CFS/fibro has felt better in a "good location". People will start to tell you that they felt "80% better in the Dominican" or had most symptoms go away while camping in a national park or while vacationing in Cape Verde or Aruba. There are many more stories on the Locations Effect page (links below) from people who have recovered from CFS using this method including Lisa Petrison, Erik Johnson and I would even include Dave Asprey in this list.Here are the steps necessary to test this treatment method out for yourself:Step 1. Find a good locationUsing the Locations Effect Facebook page, Locations Board, Mold Avoiders group and suggestions from others who have recovered from CFS, find a good area. The key aspect here is the outdoor air quality. People have felt remarkably better in places that are exceptionally pristine, these might be in the mountains, tropical coastal areas or the desert. First pick a town/area based on recommendations and proximity to you, and then look at lodging.

Lisa mentions that the KOA Cabins are log cabin construction with no plumbing. Just check in with how recently they have treated the wood and how old the cabin is. Some of them are starting to go mouldy and I suspect it's coming from the foundation.

Another HealClick member saw a total remission of symptoms at Seventh Mountain, Oregon (They use non-toxic cleaning and bath products).

Here is another review and great discussion of good US cities and towns such as: Grand Junction & Durango (CO); Socorro & Taos (NM); Moab & Cedar City (UT); Helena (MT); Wichita (KS); Hollister (CA). (Join HealClick to see the full discussion).

Boa Vista Island, Cape Verde, Africa

On the Locations Effect Facebook page you can find many good reports for the Caribbean (Yucatan, (Mexico), Aruba, etc.) as well as other tropical islands such as The Canary Islands (Spain, off the coast of Africa) and Cape Verde (Africa, off the coast of Senegal).

I have also heard very good reports from the Dominican, Cayman Islands, Puri (India), and Mt. Kailash, Tibet.

In Canada I have heard that Forillon Park (QC) is good for camping. I recommend OUR Ecovillage for camping.

North Vancouver - I know someone that did a lot of healing at this rental. The house was made with eco materials. Ask about cleaning products.

None of these locations can be expected to stay good if they have been recommended more than a year ago. For my updated list of locations see my list here and check with people in the Facebook group Mold Avoiders or the Locations Effect to see if they are still good. I often do consultations on this topic because locations and buildings change over time. I keep track of where people have done well recently. So this post will not be able to be up-to-date at all times.

If you are coming from a bad place the first step does not need to be a perfect - if the outside air is reported to be good by multiple avoiders then any building that is not mouldy or new will likely be better than nothing (i.e. better than not trying at all). More tips on finding accommodation below.

Step 2: Decide if you want to stay in a tent, trailer or regular lodging

A tent is less risky as you have way more control over the environment you are sleeping in (but could be difficult to offgas). A tent can be hard for someone who is extremely sensitive to temperature. But there are lots of tips and tricks in my post on camping.

Finding lodging that is chemical/scent/mould-free is trickier, and everyone is different in their sensitivities so even a good "recommendation" is tricky. Places also may have been contaminated since the recommendation was made.

Mercy Hot Springs has Airstreams for rent, you need to look at the age of these carefully. Having a cargo trailer with no wood, offgassed Camplite or offgassed fibreglass trailer could also provide good baseline homes. Here is my post on trailer options. And here is my post on converting a cargo trailer. I have a separate post on cargo vans.

c) Indoor lodging

Seventh Mountain uses natural cleaning products

Go with somewhere recommended by someone who has recovered there. If that is not possible, find somewhere that used natural building materials, and uses natural unscented and chemical-free cleaning products in an area that has been recommended. Generally, go for something as new as you can tolerate.

You ideally want tile or stone flooring. Definitely not carpet. Anything about 5-10 years is ideal, you can go much newer than that in countries that build a simple concrete and tile floors. A building that is 1 to 3 years old may be ideal. After 8 years or so the risk of mould is much higher.

Step 3. Prepare the items you will take with you

Note: This is Avoidance procedures from those who have recovered from CFS, MCS and CIRS and I am presenting the most extreme, or most thorough, version of this protocol which should be followed if you are very sick. (If you are not very sick you could try a moderate version).

Don't take anything with you other than specially prepared clothing and toiletries below. (Bringing your things with you will reverse your efforts!). Other necessary items like medication can be isolated. *Note: if you are coming from somewhere that you know is already pretty good or you don't have the energy to isolate all your stuff an easier version of this experiment is just to buy some new clothes keep them bagged up until you arrive, and bring only absolute essentials like medication. I think that is certainly better than not trying, but you will get a really good sense of how location affects you if you don't bring your belongings.

a) Clothing

Bring two new outfits: Organic cotton clothing is best in my experience. Polyester if you are camping or want to ozone your clothes. When they arrive in the mail put them in large ziplock bags.

Shoes: keep outside in your new location. You might need to buy shoes that will not go mouldy/mildewy when left outside like rubber boots with no lining. I have these cute plastic shoes which I love. If you are camping you're going to want rubber or plastic shoes. They are good for beaches too.

Dish Soap (I find this dish soap also works well as laundry soap and body soap in a pinch)

And yes these are all products I use. This is not the time to try soaps or shampoos with essential oils! You may become sensitive once in the clean location) and definitely not the time to use chemical-filled versions.

You can also order any supplements & OTC medications you need to take with your from Vitacost. Vitacost just became super affordable for Canadians now that they offer free shipping.

When the items arrive in the mail use the same sequestering procedure as with clothes. I have found the boxes from Vitacost to be scent-free, so you could leave the items in the box and wrap the box in foil, or garbage bag.

Also, bring extra plastic bags for containing clothes. For those super sensitive to cross contamination of fragrance U Haul has good plastic bags.

c) Medication

Clean out some glass containers to put your medication in. Or just leave as is and store in the bathroom in a ziplock bag your new location as opposed to right next to you while you sleep.

d) Electronics, Books, Money etc

Electronics (computers and cell phones) and books should not be brought unless you can keep them in your car. Electronics and books cannot be decontaminated except with loads of time (years). Use sparingly if you must use them because even using them outside could trigger a reaction. Do not bring makeup, jewellery or camera or an iPod for the same reason.

If you need ear plugs or eye mask (that eye mask needs some time to offgas) you can also order these online and use the same procedure as with clothes.

If you need any other electronics (a white noise machine, heating blanket, Kindle) buy through the mail and isolate like the other things. New electronics, especially heating blankets are quite toxic so better if you can go without. This is not the time to spend money on all new things like electronics because this test run might be an intermediate step to finding a cleaner more permanent location and that is the time you will want new things. I bought this affordable tablet for my last trip.

Bring your glasses and keep them in the washroom at night unless you are overdue for a new pair.

e) Anything else buy at your new destination such as more clothing, Advil etc.. Be careful with anything made of toxic materials until you have gotten clear for a while (i.e. books, electronics). Note: some things are not as urgent and can be ordered online once you arrive (like some supplements).

Step 4. the Decon Procedure for Body and Clothing

When you arrive at your accommodation immediately bag your clothes in a plastic or aluminum bag. Get in the shower, scrub down with your scrubber and specially bought soap and shampoo and then put on your new clothes. Store your "travel clothes" in another location, i.e. your car or in a plastic bag outside.

If you can, wash the bedding when you arrive or bring your own and request no bedding.

I bring my own bedding and pillow. What you bring might depend on if you are camping or staying indoors. I have bought this sleeping bag, these sheets, and this pillow. I also bring a heating blanket everywhere I go so I can sleep with the window open, on a balcony or in a tent. You will almost certainly have to wash or air those out before using.

Wash clothes by hand with non-toxic, scent-free soap (above). Note Borax is no longer considered safe to use in laundry for decon. Hang to dry in your safe space or outdoors. The sun helps to remove mould from clothing.

When you come inside from a car or another building: shower, bag clothes, and put clean clothes on. Then wash the outdoor clothes as soon as you can.

Step 5. Diet

It would be a good idea to follow a low-mycotoxin diet as outlined by Dave Asprey if you can. Especially important is low mycotoxin coffee such as Bulletproof Coffee. They also sell low mycotoxin chocolate.

Another note is that supplements might become more noticeably helpful when in a clean location so don't ditch them completely.

A few notes:

I see improvement in symptoms after one day of being in a good location. Certainly one week is minimum for your test run and I think one month is better.

After a few weeks you will have a heightened sense of smell and will be able to detect contaminated objects much more easily. Note that some moulds do not have a scent.

EMFs in a location are an important factor as well as pollution, chemicals and mould.

19 comments:

Erik may be recovered, but after meeting Lisa, I would not say she appears to be recovered from ME-CFS even though she claims to be. Needing to sleep late, multiple digestive issues, detox symptoms, mood shifts.... these are all things I observed and are typical of ME-CFS. Improvement, yes. Cure, no.

Hi Janis, Yes, I think it is a good idea to point out that there is no miracle cure. I know various people who have recovered from a variety of methods. I would define recovered as someone that is able to return to full time work and maintain a social life. It's a vague definition but I think we would all be pretty happy to get back to that!

I was often able to work full time and had an active social life when I lived in my house in a moldy community. But I had many relapses, and PEM from aerobic activity (although I could do yoga for 8 hours a day). Each time I went into remission, I thought I was on the road to full recovery, but I never made it to 100%. What I find doing mold avoidance is that I have a lot more control and never get slammed to the point that I go into relapse. But it's a miserable life for now. I know a few others doing this and they've been at it more than 6 months. Probably takes 4-5 years to get to the point where you can tolerate mold again.

"Subject: [sickbuildings] Joe Kleins Website From: "erik_johnson_Date: Thu, 25 Apr 2002 15:59:20 -0000 To: sickbuildings@yahoogroups.com "It's absolutely awesome to hear someone else describe the ability of hair to maintain and transport the mold. I found that wool garments are no different. I noticed that some contaminated places give me a huge "hit" but that I could walk away and recover without decontamination. Other places might hit me less, but I would carry the "reaction" with me. This led me to believe that the neurotoxic reaction was to aerosolized mycotoxins and not necessarily inhalation of spores. I tested this by placing a contaminated article in HEPA filters and taking it to my "clean" place. I put it under six layers of blankets and slept on it. I got the usual reaction and removed the article but went back to sleep on the same blankets. The reaction was gone. This convinced me that that spores had not penetrated the filter or blankets and that the toxic gas was truly my primary irritant. This was confirmed by Dr Marinkovich who told me that a housing project in Sweden had recently been identified with sick inhabitants but no spores could be found. Only when the walls were opened up were the colonies found, but they were so tightly sealed in the walls that only the toxic gas could escape. Many places that give me mold hits are strictly VOC hits and not spores. When I leave these areas I do not have to bother with decontamination. -Erik"

I'm wondering about the step under "Upkeep" that says to cover your newly washed bedding with a plastic cover. Is that to shield it from airborne spores? In my experience I have found plastic doesn't allow anything to breathe and tends to grow mold due to lack of air. Plastic is toxic anyway. Let me know what the philosophy is behind this. I might be misunderstanding. Thanks for the tips.

I agree with what you said about mattresses hosting a lot of mold. When I lived in a humid place, my mattress and pillow often had mold, as well as my clothing. It was very disconcerting, but could have been avoided had I taken certain steps to fight the mold. Now, I have learned that the sun does indeed do wonders to fight mold. It's just a habit for me now to let my things dry out in the sun when necessary. http://www.aeconllc.com

In addition to the support from the instructors at the AIM Institute, the time allotted to me by my workplace to complete the WebEx classes and homework assignments was pivotal in my completion of the certification as well. Without Thogus’ support and encouragement throughout the program I may not have done as well or even have been able to complete and pass the classes. - See more at: http://www.moldbustersllc.com/mold-remediation/

Your link no longer works for the clothing - the part of the article that says "I recommend this store to buy leggings and t-shirts from (is cheap but not great quality)." - Are you able to fix it, or share the name of the store?

I have always camped with an extension cord. though some people charge their devices during the day somewhere and some people use a solar kit like goal zero in the post on cargo vans. I would start in a backyard if that's all you can do. I have done it. But if the house is very mouldy that will reach 30 feet or more IME.